All,
My 7 year old son has PANDAS. The past year and half have been a very tumultuous time in my families life. While some kids have a very mild impact, some kids (like mine) can have a much bigger impact.
The timing for this post is quite eerie. I decided this week that I want to start helping other families that are dealing with this. (I asked Hashem yesterday for a sign that I should take on this endeavor and today I see this post) While I know I won’t be able to do everything on my list below, I want to start talking to families that have kids with PANDAS. I want to see if there is any way I can start helping them (even if just giving them information), I want to see what areas do ppl most need help in, I want to see if they are willing to connect and talk to other families that are going through a similar thing and you can even let me know if you want to help me in my endeavor. Lastly, I am just trying to get an idea of how many families have kids with PANDAS in our communities, so it can help when I go talk to people, that this is impacting many families.
While there are many great Jewish organizations, There is a gap in getting help for families such as myself, since we do not “fit the requirement” for these organizations.
I know families need help in areas such as
1. Medical assistance
-initial pre-screen to help families determine if child potentially has PANS/PANDAS, what labs their doctor should be checking, general info etc..
-referrals to get people quickly into treating providers
-help fight insurance companies when treatment gets declined
2. Financial assistance
-many times families can’t afford to go to PANDAS treating doctors due to cost or don’t do recommended treatment due to cost
3. emotional assistance
-linking families up with other families that have gone or going through this
-support groups
-Education/awareness (many times kids are just told they have a psychiatric issues and go on many psych meds, when perhaps a few weeks of antibiotics would of totally healed them.) Many people just don’t have the awareness and never heard of PANS or PANDAS
-help with siblings/family since they are also being traumatized by this (big brother/big sister, maybe tickets to sports games etc.)
4. School assistance
-Help going through the IEP process and getting placed in a therapeutic school (may need advocates, lawyers etc..)
Contact info is not allowed. Sorry